A qualitative longitudinal study of a health psychological group intervention for patients with ME/CFS, 2023, Keurulainen et al

Full title: ‘I became more aware of my actions’—A qualitative longitudinal study of a health psychological group intervention for patients with myalgic encephalomyelitis/chronic fatigue syndrome

Objectives

To explore myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients' experiences of a health psychological group intervention and its usefulness, non-usefulness or harmfulness for illness management and adjustment.

Design
A qualitative longitudinal study using inductive content analysis.

Methods
Semistructured interviews were conducted with 10 adults. Interviews were conducted before the 16-week intervention, immediately after its completion, and at 3 months after completion.

Results
Participants reported that the intervention was useful and not harmful. The model improved their ability to cope with ME/CFS by providing them with useful information about the illness along with peer support and professional guidance. Participants reported improved illness management and adjustment, which they perceived as an outcome of achieving new ways of thinking, feeling and acting.

Conclusions
Participants viewed the health psychological approach to group intervention as meeting their needs. To achieve better illness management and adjustment, more consideration should be given to supportive interactional processes with peers and healthcare professionals.

Patient or Public Contribution
The intervention was developed to meet patients' needs of finding ways to manage their illness. The research team consulted eight patients with ME/CFS and three clinical centres working with ME/CFS treatment and rehabilitation at the intervention planning stage. Their comments influenced the planning and content of the intervention as well as ethical issues that should be considered, such as potential harm to participants. All participants were informed about the theoretical foundations of the study and the principles guiding the intervention. Participants were not involved in the data analysis.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/hex.13833

 

Despite the usual psych wibbly-wobbly language, I think this is an example of supportive CBT that supports patients adapting to the limitations imposed upon them by ME/CFS, rather than the usual CBT for CFS that demands that patients ignore their symptoms, which is why I have not posted in the psychosomatic research sub-forum.

 

There’s still an embedded assumption that ME/CFS patients will need psychotherapeutic help in order to adjust and adapt. And there’s a giveaway suggestion that a middle ground needs to be found between too much and too little rest. Not wholly convinced.

 

Does anybody know how or if this groups of researchers is connected to the likes of Riikka Paasikivi, Helena Liira and
Mari Kanerva?

 

Glad to see this +ve received. I wonder though if it would be better if they'd monitored activity pre/post intervention i.e. using actimetry/FitBit type devices.
E.g. that would give a body like NICE reliable evidence to assess these interventions and answer the question - do they provide value for money/should they be funded?

 

The approach may well be based on sensible thinking but I think we have to accept that the study tells us nothing useful because the methodology isn't up to it.

 

Right.

That's very problematic. It meets some needs. Mostly minor needs. It doesn't look all bad, but it gives a very false impression of how useful this is, that this is a replacement for medical care, when it's alternative health care.

And really, it's probably no more useful than a GP pointing the same information in the first place, with no need to employ therapists at all. This is really all about making up for the failures of medicine, it's not the way solve problems.

It may be useful, but it's a very mild usefulness. But at least it's not all bad.

 

Wondering how the methodology could have been improved --- I suggested actimetry/FitBit type devices --- seem to recall a thread where other indicators were suggested. Perhaps it would be possible to get more insight [beyond actimetry/FitBit] to see if there were ways to measure --- "has this helped you deal with your illness?"

 

Group sessions are cheaper. Only reason they're so popular. Healthcare has the same optimization approach to make everything cheaper per patient. It makes sense in a general sense, just not here because they're dividing by zero anyway.

 

Oh yeah completely false. How much does it cost for a 10 minutes explanation the first time someone sees a GP, the sends them to a proper resource that is accurate? If all they're doing is explaing basic stuff like this.

So much less than this. They're not even comparing correctly, like when they do non-inferiority trials. 0 is non-inferior to 0. It is the same value. Both worthless, but they claim savings from literally doing nothing. One day economists will pore over this and come out wondering what the hell is wrong with this profession. Although, likely AIs will do that soon enough and maybe discover infinite puzzlement.